[joskimo]

I was looking for other adoptive parents of children with SI problems. We adopted at birth, our daughter is incredible. She was born crack exposed, but was a great baby. NOt long after her first birthday we noticed she was agressive with other kids and with us, after a few months of trying different interventions we finially got the Early Intervention program involved, after 2 months of meetings and observations, we have a diagnosis. I just cried like a baby. She's incredibly smart, hitting all her develomental milestones just like she should, but gets really overwhelmed and just lashes out, it's just heartbreaking. Anyone else out there?

[qs mom]

Bless you! You are not alone. SID/SPD is very frustrating!

My son was almost 3 when I brought him home from an Eastern European orphanage. He's is so smart, but cannot control his body.

Read "The Out of Sync Child". It helps a great deal. Have a great OT. Do a sensory diet at home. Collect info and documentation for when she gets to school.

Because, trust me, you will be pushed into treating her for ADHD as she gets older. My son is very tactile - he touches EVERYTHING and moves constantly.

Find what makes her feel comfortable and keep using that therapy.

[Cristi727]

My son has SID as well. We use the fun activities in the book A Child with SID has Fun. He doesn't even realize that the games are to help him because he is too busy having fun. My son has greatly improved. The more I learn about the disorder the easier it is to deal with it.

[joskimo]

Thanks for the responses. I've been reading "Raising a Sensory Smart Child" which is really good, very empowering. So much is written for older kids though, even OUt of Sync wihich is next on my list won't really address how to deal with these issues with kiddos who are pre-verbal. Well she's got about 40 words in her vocabulary, but in the next year that will multiply I"m sure.

HOw do you explain this disorder to people, I feel soemtimes like folks think I'm nuts. I've had our Early INtervention person go to daycare to help. WE will have an OT soon, my early intervention person kind of balked when I requested an OT, I didn't understand that. I explained that while she'd given us great suggestions, the OT should help us to refine that list and tailor make a sensory diet for Hannah.

[qs mom]

My son is 6. He's been with me for 3 years. SID/SPD is a very mis-understood, unknown condition.

Many think that the child is just willful, and needs more discipline. I've had people tell me that a good spanking will cure my son of his touching, moving around, chattering for noise.

I research on the 'net. I print the pages, highlight my son's behaviors - cause/effect. Be knowledgeable. Speak about it confidently, because people will tell you otherwise. I have educated my son's pre-K teacher, his kindergarten teacher, the principal. The kindergarten teacher and principal are special ed - they knew very little of it.

I politely say that, my son has a neurological condition, in which sensory information doesn't get to the right place in his brain - he's not 'being bad' to irritate you.

[Cristi727]

I tell others that my sons body has "turned off his sensory functions" and that he has to work hard to re-learn this function. I hope that helps. I too get weird looks, like control your child (my son has personal space issues). It hurts to see other people react negatively to him. Thankfully though he is such a happy child he doesn't notice the negative.

[joskimo]

can I ask if it's effected your decsion for more kids? i'd really wanted to adopt another one when Hannnah got a little older, but now, not knowing what it's going to take to raise her, I don't think we should adopt another one. We have an older daughter, age 12. This is still new to me, we've only had the diagnosis for a month now I think, so in addition to mourning her difficulties and feeling sorry for myself on bad days, I'm also mourning that I'm going to change my plan. Don't get me wrong, I adore my dughter and I'd do it all over again a million times over, it's just a lot of readjustments.

[qs mom]

How old is she? I thought you had posted, but I looked back and couldn't find it. Is she is still young, you can build some of those neural pathways with a sensory diet.

I've read that you can really build them until about 5.

I really wanted to adopt another child after my son came home. I realized that I probably won't be able to. I still keep it out there. I'm a single mom, I lost my job after bringing my son home. I took a job that pays considerable less than I made before. So, financially, I could not afford to adopt again.

If I had the money to adopt another child, would I? Quite possibly. Having another child with my son might be good for him. More 'kid' time, would be great. Maybe one day.

[joskimo]

Hannah's 21 months old - so yeah she's really young, she's a joy when she's on, but she's a challenge when she's in a mood. She got kicked out of daycare 2 weeks ago. We negotiated a spot at the providers other center but if it doesn't work then I'm at a loss. ILP is working with daycare and at home, so i'd think they would be more understanding, that we aren't passivly parently, we're actively trying to find out what it's going to take to keep our duaghter "on" but it's going to take time. i just lost it when she got kicked out of daycare, couldn't stop crying. I'm not much of a crybaby, but ever since i got her diagnosis, I'm pretty sensative about her.

[qs mom]

I know it doesn't sound like it, but it's a good thing she is so young. Really schedule time to work on the sensory diet. Make note of what her aversions are and what she seeks. Try to introduce her to her aversions so that she will be able to start those pathways forming.

And I understand your crying. My son was kicked out of public pre-k. I was pretty ok with it, I had a plan for another school. But he got kicked out of daycare. He had been there a year and they adored him. I wept like a baby, as did the director. He was also kicked out of another daycare this summer. I kind of expected that one. I'm now in a tough spot. I don't have a daycare choice now. My folks get him on the bus and babysit him for an hour until I come home. I changed my hours at work.

Find other parents of kids with special needs. They understand. They will comfort you without you even realizing it. I frequent the specials needs boards here - they're a fantastic group of parents with a ton of experience. We chat on Wednesday & Friday nights - come join us. If nothing else, you'll feel better knowing you're not alone.

[joskimo]

we started a communication journal with daycare, to write about her day and evening, trying to note triggers, effective interventions, and list sensory activities that we're doing. I really wish we could afford for me to stay home to work on this with her.

Originally Posted by q's mom

Try to introduce her to her aversions so that she will be able to start those pathways forming.

I'm not sure what that means, but I haven't found too many tings she hates other then footie pajamas and slippers. Her thing seems to be more of excitement, she gets super excited at other kids and hurts them, mostly babies and toddlers her age. She strikes out at some older kids and adults, but we're able to defend ourselves better.

I will check out the special needs chat - honestly I'm still grappling with that lable --

[qs mom]

My son's triggers are the primal things - he's hungry, tired or has to use the bathroom. Those 3 things came send him into a meltdown.

Aversions - for my son, he's tactile. So certain texture make him back away. This is so with food textures too. He wouldn't eat yogurt with fruit in it, oatmeal with fruit in it, ice cream with chips, etc. I reversed it on him. I gave him strawberries with plain vanilla yogurt on it. He'll now eat almost anything.

We were lucky. His daycare was owned by an OT with a specialty in SI. So they have a rice table, painted with pudding, grass, bare feet. Played classical music in the background. Massage if the kids had a hard time with nap.

[momtutu]

Hi, my son has been diagnosed with SI too! He is three. We adopted him straight out of the NICU. He was a preemie and drug exposed. We do a lot of bouncing, brushing, and compression therapy with him. His OT taught us these techniques in order to help him cope when over stimulated. We also have a weighted vest that he used to wear at daycare that helped during high stress moments. Does any of this sound familiar?
Lisa

[qs mom]

Very familiar.

My son has a move n sit cushion, and weighted vest at school. I've bought some compression garments too. I actually buy him dance tights. I try to get him the footless kind so that he doesn't look so strange, just like he's wearing long underwear. They help a lot.

EMDR works nicely too. I was with a wonderful 14 year old boy with SPD today. He seemed so calm to me. His mom told me he was very much like my son, at my son's age. I did notice that while he was sitting in the chair, he started doing 'hook ups'. Anyway, that is what my son's kindergarten teacher called it. It corsses the mid-line which is great - put your arms out straight, hands back to back. Move your hands, one over the other, and hold hands. Push your hands down towards your belly, pull them under and back up towards your chest to your chin. It's calming. It was great to see him doing it on his own, realizing he needed 'something'.

I pray my son gets to that point, where he will recognize his body is getting out of control, and calm himself without intervention.

[joskimo]

We haven't gotten a referral to the OT yet, our Early Intervention person has a special ed degree and has given us a list of things to try, but I requested an apt. with the OT to refine the list for Hannah. She didn't seem happy about my request but we should get it eventually.

It's just slow going with the state program and Hannah got kicked out of daycare 2 weeks ago, moved to another location/same owner but I feel like her position is on shaky ground because of her aggressive behavior. If she gets kicked out of this site then I"m just at a loss, any move for her would be an ultra-triger I'm sure. And we've only had the diagnosis for less then 2 months now so we're working diligently and the EI worker has even gone to daycare a few times, so they know we're trying. It's just so hard sometimes.

I know they have weighted vests and blankets for check out so we should try that to see if it helps.

I actually buy him dance tights

.Tight clothes don't work for her though, I put on a tight pj top the other evening and she hated it.

[quote=momtutu]Hi, my son has been diagnosed with SI too! He is three. We adopted him straight out of the NICU. He was a preemie and drug exposed.QUOTE]

You are the first person I met who mentioned drugs, Hannah was also exposed to drugs in utero. I think it's a more rampent problem then people realize.